|Final clinic visit. From left: Dana (CNA in the Clinic), Kim and |
Teresa (Nurse Coordinators), Sarah, Todd, Ethan, Dr. Troy Lund;
front: Ann, Child Life Services
I'm sorry for not posting earlier, but when we're home we've got all the house stuff and dog walking in addition to the kid stuff keeping us busy, so it's often harder to find time to write. In fact, I'm not sure how long this post will be. Ethan's eyes have already peeked open, so I expect him to wander out shortly and announce the official start to the day.
|Caleb, in a tree at cousin Brian's farm.|
At the moment, we're trying to settle into some type or routine. It's a process of discovery and evolution. Ethan and I still seem to be on Minnesota time, waking up at 5:00 or 5:30. Sarah's been getting up early, too. So, we're having long, relaxing mornings in our own space. It all feels rather decadent.
Medically, Ethan is still doing very well, though they drew blood for a new set of chimerisms before we left Minnesota and we still haven't seen those numbers. His chimerisms show his engraftment level and having one marker in the 90s (good) and one marker in the teens (bad) will be a continual source of worry for us even though the doctors say that they won't worry too much unless that 90s marker drops below 50.
|Ethan in all his steroid glory last December.|
In insurance news, we've been receiving the summary of charges that they've paid for Ethan's care in Minnesota. The current total for this transplant is $855.566.81, added to the cost of his first transplant and Ethan is certainly our million dollar boy. The cost to Sarah and I for the transplant is much, much less. Our total out of pocket will certainly be something less than $3,000 including the travel and lodging costs. Once they approved our request for a referral to Minnesota, our insurance company, Kaiser Permanente, really took care of us. The benefits were excellent.
|Caleb in his cape after the day's "magic camp." Picture|
taken at an outdoor concert featuring Grandpa
Bob's community symphony.
Moving out of Kaiser is kind of a melancholy thing. Once Kaiser approves something, the benefits are very good, and we've loved the speed and record sharing of their referral system. When we've gotten a referral, typically we've had an appointment set up within 24 hours and get into see the doctor within the next week, unlike our prior experience with independent doctors. It's also been nice that each of the doctors has had full access to Ethan's records.
|Caleb and Grandpa Bob at the Oregon City Farmer's Market|
The big downside of having to move out of our HMO is that we loose access to Ethan's primary care physician. We've been working with her since before Ethan's first transplant. She's very good at looking at Ethan as a whole kid and balancing and prioritizing what's going on with him. And she's been a great big help in other areas and very easy to work with and we will be sorry to loose her. Which means we've got to find a new primary care doc for Ethan.
We've talked with Ethan's transplant doc and with Ethan's current PCP about what we should look for in a new pediatrician for Ethan. Clearly, first and foremost, it needs to be someone who enjoys working with complex cases. In other words, they've got to want to have him in their practice. They have to be willing to accept the fact that Ethan will see a lot of specialists, so they may not get to work with him a lot, but that he will generate an exceptional amount of paperwork coming across their desks, reports form the specialists, lab results, x-rays, CTs, MRIs. A good PCP will take the time tow go through all of that enough to keep a good command of his care picture and needs and a really good doc will read it closely enough to find where the specialists have made mistakes or are overlooking something. For us, a new PCP needs to be accessible and willing to communicate with us directly and not shift us off to their nurse or medical assistant. There are just too many people involved in Ethan's care for us to loose things in translation. And finally, our PCP needs to be honest with us. Because if you get right down to it, the specialists will always have another thing that they can try. It will be a good PCP who looks at the whole picture and says, you know what, we may not be able to push this any further.
It's hard to believe that I've only been home 7 days. It feels like a lot longer, even though I still can't remember where things are in the kitchen. Even though our days are calm, it feels like we're running, or at least at a brisk jog. That seems par for the course around here.
Thanks for checking in on us. We'll try to write more soon.